Treatment & Care
Undoubtedly, you were distressed when you learned that your child has Loeys-Dietz syndrome. That’s understandable — no parent wants her child to be unwell, and Loeys-Dietz syndrome can cause some serious health problems.
However, keep in mind that the symptoms — and their severity — of Loeys-Dietz syndrome vary widely. And although there is no cure for Loeys-Dietz syndrome, advances in treatment mean that doctors can help increase your child’s life expectancy and quality of life.
At Children’s Hospital Boston, a team of medical specialists will work with you and your child to design an individualized plan of treatment — so that we may effectively manage the condition and allow your child to have a healthy, productive life.
Our multidisciplinary team
Loeys-Dietz syndrome is a complex condition, and no one specialist is equipped to treat your child for all of his symptoms.
That’s why at Children’s, we have an innovative multidisciplinary approach to treating children with Loeys-Dietz syndrome.
Your child’s care team may include physicians from several disciplines, such as Ophthalmology, Orthopedics, Genetics and Cardiology who have experience treating kids with the varied symptoms of Loeys-Dietz Syndrome.
We’re also continually involved in research with physicians and researchers in other institutions in an attempt to provide the most up-to-date and effective care for children with Loeys-Dietz syndrome.
How is Loeys-Dietz syndrome treated?
Loeys-Dietz syndrome can be a complicated condition, and it affects different children in different ways.
- Some children with Loeys-Dietz syndrome may only need minimal treatment.
For those children who do need more treatment, we focus on managing your child’s symptoms
So what kinds of treatments are there?
They fall into several categories, depending on what part of your child’s body is affected.
Since the most dangerous complication of Loeys-Dietz syndrome is the rupture of an aneurysm, such as of the aorta — which is potentially fatal — it’s important to get the right treatment.
- Typically, we treat aneurysms with medications called beta blockers that slow down your child’s heart rate and lower the blood pressure in your child’s arteries to reduce the risk of rupture.
- Your doctor will also want to continually monitor your child’s aorta and arteries for aneurysms; depending on the size of the aneurysms and their rates of growth, your doctor may recommend an imaging scan every six months to a year.
Your doctor will likely suggest that your child avoid certain high-impact activities such as competitive contact sports and weightlifting because they can place higher stress on the aorta and increase the chances of a life-threatening rupture.
- A good rule of thumb for cardiovascular activity is that your child should be able to hold a conversation while exercising.
- Your doctor may order an x-ray to check for instability in your child’s cervical vertebrae (the vertebrae at the top of the spine). In rare instances, if the connection is very unstable, surgery may be recommended.
- Some children with Loeys-Dietz syndrome suffer from craniosynostosis, a condition that causes the sutures in the skull to close too early, resulting in increased pressure within the skull and a distortion of the facial bones. For more information on treatment, see our craniosynostosis page.
- Your child may need surgery or bracing to help control scoliosis. For more information on those techniques, see our scoliosis page.
- If your child has clubfoot there are several methods of treatment that have been proven effective. For more information, see our clubfoot page.
- Some children with Loeys-Dietz syndrome have congenital hip dislocation. For more information on this condition and how we treat it, see our page on hip dysplasia.
Chest wall abnormalities can be corrected surgically or with braces. For more information, see our pages on pectus carinatum (pigeon breast) and pectus excavatum (funnel chest).
Joints and bones
If your child has the flexible joints characteristic of Loeys-Dietz syndrome, he may experience some pain after physical activity. The orthopedic physician will discuss ways to manage this pain.
Facial features and mouth
- If your child was born with a cleft palate (a hole in the roof of his mouth), surgeons can repair it, typically when he is around nine months of age. Visit our cleft palate page for more information.
Hypertelorism (widely spaced eyes) is not usually an issue that needs any intervention.
What kind of support will we get?
At Children’s, we consider you and your child integral parts of the care team and not simply recipients of care. Your care team will be with you every step of the way to ensure that you and your child are getting the support you need.
We want to maximize the safety and effectiveness of whatever therapy you and your child’s doctor decide upon.
Supportive care involves preventing and treating infections and side effects of treatment to keep your child as comfortable as possible while we’re working to manage the symptoms of her Loeys-Dietz syndrome.
Continual follow-up care
Your child's physician and other members of your care team will work with you to set up a schedule of follow-up visits.
|Cleft lip and palate|
|Watch videos of one of our surgeons describing Children’s approach to treating cleft lip and palate.|
|Cleft lip and palate iPhone app|
|The Department of Plastic and Oral Surgery at Children’s is excited to offer an iPhone app that offers some basic information about cleft lip and cleft palate. We hope this app makes it easier for parents to educate themselves about these conditions and to communicate with their doctor about care for their child.|